Turner Syndrome Foundation
Written by Elizabeth (Liz) Rivera, Turner Syndrome Foundation (TSF) intern and blog post writer.
TSF’s newest volunteer endeavor, the Awareness Committee, has started full speed ahead on its first project, a video project called The Questions Campaign. The Awareness Committee aims to raise awareness of Turner Syndrome (TS), but what does that mean?
Why Awareness Is Important
As the mom of a 32-year-old woman with TS, I feel that the public has to become more aware of the condition and how it affects each girl and woman. We knew our daughter had TS at six weeks old, but most of her doctors were not familiar with it. I also think that local Departments of Education have to become more aware of TS and the educational challenges it can cause for girls/young women, so that they can get the help they need.
Lori, Committee Member
There are many different populations of people the Committee hopes to reach: healthcare providers, educators, expecting parents, and the general public. Additionally, the Committee seeks to raise awareness through those affected by TS, sharing stories and information that may be helpful to others in their TS journey.
You can learn all about who is involved with the committee on our website. If you are interested in finding out what they’re currently working on and how you can get involved, keep reading!
About the Awareness Committee
The Awareness Committee currently consists of seven volunteers who are dedicated to raising awareness. Some have been involved with TSF for years, while others more recently discovered us.
Committee member Jenna shared, “the reason I joined The Awareness Committee is because when I was first diagnosed with TS at seven years old, TSF was there to inform my mom and me on the condition and how to manage it. So I want to do my part to help give that same information to others who may need it like I did.”
Together, the group discusses the importance of raising TS awareness, considers possible solutions, and decides which ones to implement. This collaboration fosters friendships among those who have TS. Nicole, another Committee member, said, “The best part of being on the Awareness Committee to me is that I get to work with other women who have Turners Syndrome and whom I can relate to.”
Awareness Committee Video Project: The Questions Campaign
When the committee first met, everyone was in agreement about wanting to showcase the diversity of experiences with TS. Each girl and woman has a unique experience, while also sharing many commonalities. They decided to begin a video project that would display exactly that. This project eventually became named “The Questions Campaign,” inspired by YouTube videos in which celebrities answer questions about their lives.
“The questions video campaign is very fun to be a part of because it allows everyone to tell their own story and journey with TS. It also spreads awareness and knowledge about TS. My hope with this campaign is to give hope and inspire girls and women who may be newly diagnosed, so that they know they are not alone and have hope for a bright future.”
Nicole, Committee Member
The project has started with each Committee member creating their own video to share their story. Each member wrote their own questions. This way, they highlight interesting parts of their journey with TS, and things that make them unique as a person.
The first video is live on our YouTube channel, and we will continue adding videos weekly. Make sure to subscribe so that you don’t miss an upload!
How To Get Involved in The Questions Campaign
Make sure to follow our blog and social media. In a few weeks, we will announce an opportunity for anyone to share their story in a video!
Want to help the TS Community? Check out these articles:
Understanding Experiences with Turner Syndrome- Research Project
Grassroots Activism for Turner Syndrome: YOU Can Make a Difference!
